COVID-19 PATIENT DATA CAPTURE   ERN-LUNG has created a patient data collection sheet for the network´s experts to gather information regarding patients with rare lung diseases that have contracted SARS-CoV-2 and exchange important infos on experiences. As your experience with SARS CoV-2 may be relevant for other experts treating patients with the virus and the [...]

Disease specific registries   This group of registries will encompass new and pre-existing and/or amended and/or bridgehead-connected existing registries for CF, PCD, non-CF BE. These registries (CF, non-CF BE, and PCD) and possibly others will be horizontally linked with each other for benchmarking purposes etc. These registries have been in existence and will remain outside [...]

POPULATION REGISTRY of all rare respiratory diseases   This again is a new registry of all rare respiratory disease patients, making use of the basic data set. The registry is patient driven and will provide the possibility to add patient recorded data. The new POPULATION REGISTRY is collecting data from patients directly, irrespective of the [...]

ERN-LUNG Registry This is a new registry which will be using the European Common data set plus health care data. This registry is making use of the same minimal data set as all other registry applications but only stores data necessary for specific uses within ERN-LUNG for ERN-specific questions, i.e. health care utilization, cross border [...]